Dear list members,
Last week, I was privileged to attend the FamiliesUSA Health Action 2001
National Grassroots Meeting in Washington DC, along with PD advocates
Hilary Blue and Perry Cohen from the Parkinsn list, and Lupe McCann (who
has promised to join the list soon.)  We thank the Parkinson's Disease
Foundation for sponsoring our attendance at this conference. It focused
on the future of health care in the U.S. and the roles of advocates and
advocacy coalitions in reforming the system. I will attempt to briefly
summarize, some of the workshops I attended, and post the summaries as
they are completed, in the next few days. I also brought home about 20
pounds of printed materials and new web resources to check out. If anyone
is interested in a specific subject, and would like more info. - let me
know.
The Conference in general:
The major subjects of the conference were: Expanding health coverage to
the uninsured; Medicare and Medicaid reform; Children's Health Insurance
Programs; Managed Care; Long Term Care; Prescription drug coverage, and
the Politics of health care reform.
Attendees included health care advocates from all over the country and
from a wide variety of health, social service, political, labor,
government agencies, and advocacy organizations. We noted that most of
the attendees seemed to be "professional" advocates -- reps. from
organizations and agencies, rather than patient advocates, such as
ourselves. As a result, we found the focus was mostly on health care
issues and policy in general, not on specific conditions, such as we
usually focus on. This required us to approach the issues somewhat
differently than we normally do, and broaden our frames of reference,
which I think had some positive outcomes.

I came to better understand that in many ways the problems PWP experience
in getting accessible, quality and affordable health care, are shared by
millions of Americans, battling other illnesses, chronic conditions, and
disabilities. Remedies to many of these problems will require  health
policy changes and new legislation, at the local, state and federal
levels. All types of health advocacy groups will need to work together to
address our common problems and lobby our elected representatives for
quality, accessible health care for all. This will be especially crucial
in the next 4 years, since although the time seems ripe for change, many
of the proposals coming from the White House and Congress may not be in
the patients' and health consumers' best interests. We all need to be
informed and involved. Many health advocacy coalitions already exist, and
new ones will need to be formed. The PD community, both as individuals
and as organizations, should be involved in these cooperative efforts.

An example of such a coalition is NeuroAlliance - a new organization
sponsored by the American Academy of Neurology - it is seeking to build
state level advocacy coalitions between patient/consumer groups, state
agencies and neurologists. We had a very interesting discussion with
their representative. The organization already exists in California,
which will serve as a model for other states, and another is forming in
North Carolina.

The political highlights of the conference:
- - Senators Hilary Clinton, Ted Kennedy and Tom Daschle were among the
speakers. Their speeches and other conference presentations are available
as Webcasts and/or transcripts on the Kaisernetwork website:
www.kaisernetwork.org  (which is also a great source of health policy
information).
-- Congressman Henry Waxman - well known to Parkinson's community --
received a FamiliesUSA Lifetime Advocacy Award.
-- Lupe, Hilary and I also met with the legislative aides of New York
Senators Hilary Clinton and Charles Schumer. We hope this will be the
beginning of a more proactive role in PD issues for them, as Lupe told
their aides  "We're asking our Senators to be our champions in Congress."


I thought our meeting with Schumer's aide was especially worthwhile. The
young man (as Lupe noted - it seemed everyone working on the Hill was
young, good looking and thin!) at first seemed sort of cool towards us --
until someone asked if he knew anyone with PD. He seemed to hesitate, but
then shared that his grandmother has Parkinson's and is in a nursing
home. We asked how she was doing, and it might have been my imagination,
but I thought he was close to tears. He talked about her a little, and
his attitude suddenly seemed to change - he started asking us questions
and wanted more information and ideas about what the Senator could do to
help. I wondered if he could have forgotten about her at first, or was
trying to be "professional" and detached, or if he just wasn't making the
connection between the 3 middle aged women in his office and his elderly
grandmother in the nursing home.
Anyway, our visit did seem to open the door, and we will follow up.

As we heard over and over during the 3 days -- it is so important to put
a face on the issues. And it was our experience that almost everyone we
talked to knew someone who has PD.
More later,
Linda